Alfred Marcus

The LIVESTRONG Survivorship Center of Excellence Network

IntroductionThe LIVESTRONG™ Survivorship Center of Excellence Network consists of eight National Cancer Institute-designated Comprehensive Cancer Centers funded by the LAF between 2004 and 2008. The Network was created to accelerate the pace of progress in addressing the needs of the growing survivor community.MethodsThis paper will briefly describe some of the salient issues surrounding the care of cancer survivors, and examine models of survivorship care that are being developed in individual Centers of Excellence (COE) as well as in the overall Network.Results and ConclusionsAs the recommendations and policies for optimal survivorship care have to be feasible and relevant in the community setting, each COE is partnered with up to three community affiliates. Through these partnerships, the community affiliates develop survivorship initiatives at their institutions with support and guidance from their primary COE.

How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG™ Survivorship Center of Excellence Network

IntroductionThis study examined the association between sociodemographic, cancer treatment, and care delivery factors on young adult cancer survivors’ confidence in managing their survivorship care.MethodsSurvivors aged 18–39xa0years (nu2009=u2009376) recruited from the LIVESTRONG™ Survivorship Center of Excellence Network sites completed a survey assessing self-reported receipt of survivorship care planning, expectations of their providers, and confidence in managing their survivorship care. Multivariate logistic regression identified characteristics of those reporting low confidence in managing their survivorship care.ResultsMean age was 28xa0years; mean interval from diagnosis was 9u2009±u20098xa0years. Seventy-one percent reported currently attending an oncology survivorship clinic. Regarding survivorship care planning, 33% did not have copies of their cancer-related medical records, 48% did not have a treatment summary, and 55% had not received a survivorship care plan. Seventy percent identified the oncologist as the most important health care provider for decisions regarding test and treatment decisions while 10% reported using a “shared-care model” involving both primary care providers and oncologists. Forty-one percent were classified as having low confidence in managing survivorship care. In multivariate analysis, low confidence was associated with non-white ethnicity and lack of a survivorship care plan (both pu2009<u20090.05).Discussion/conclusionsFindings suggest that provision of survivorship care plans for young adult cancer survivors can be used to improve confidence in managing survivorship care, particularly for ethnic minorities.Implications for cancer survivorsSurvivors should consider advocating for receipt of a survivorship care plan as it may facilitate confidence as a consumer of survivorship care.

Predicting cancer prognosis using interactive online tools: A systematic review and implications for cancer care providers

Cancer prognosis is of keen interest for patients with cancer, their caregivers, and providers. Prognostic tools have been developed to guide patient–physician communication and decision-making. Given the proliferation of prognostic tools, it is timely to review existing online cancer prognostic tools and discuss implications for their use in clinical settings. Using a systematic approach, we searched the Internet, Medline, and consulted with experts to identify existing online prognostic tools. Each was reviewed for content and format. Twenty-two prognostic tools addressing 89 different cancers were identified. Tools primarily focused on prostate (n = 11), colorectal (n = 10), breast (n = 8), and melanoma (n = 6), although at least one tool was identified for most malignancies. The input variables for the tools included cancer characteristics (n = 22), patient characteristics (n = 18), and comorbidities (n = 9). Effect of therapy on prognosis was included in 15 tools. The most common predicted outcome was cancer-specific survival/mortality (n = 17). Only a few tools (n = 4) suggested patients as potential target users. A comprehensive repository of online prognostic tools was created to understand the state-of-the-art in prognostic tool availability and characteristics. Use of these tools may support communication and understanding about cancer prognosis. Dissemination, testing, refinement of existing, and development of new tools under different conditions are needed. Cancer Epidemiol Biomarkers Prev; 22(10); 1645–56. ©2013 AACR.

Responding to a significant recruitment challenge within three nationwide psychoeducational trials for cancer patients

PurposeWhen faced with a significant recruitment challenge for three nationwide psychoeducational trials targeting prostate and breast cancer patients, the Cancer Information Service Research Consortium initiated outreach efforts to increase accrual. Recruitment is reported by major outreach strategy to inform the use of similar campaigns, either as primary recruitment efforts or to supplement “in-reach” recruitment within oncology settings.MethodsDuring a 33-month period, recruitment was tracked from the National Cancer Institute’s Cancer Information Service (CIS), the American Cancer Society (ACS), Dr. Susan Love Research Foundation’s Love/Avon Army of Women (AOW), Internet advertising, press releases, radio/television interviews, recruitment materials in community venues, and outreach to churches and cancer support organizations.ResultsAcross projects, the majority (89xa0%) of recruited participants (Nu2009=u20092,134) was obtained from the CIS (nu2009=u2009901, 19xa0months of recruitment), AOW (nu2009=u2009869, 18xa0months), and ACS (nu2009=u2009123, 12xa0months). Other efforts showed minimal gain in recruitment.ConclusionsCancer information programs (e.g., CIS and ACS) and registries of individuals willing to participate in cancer-related research (e.g., AOW) can represent exceptional resources for outreach recruitment of cancer patients, especially when the eligibility criteria are highly restrictive. However, these resources do not yield samples representative of the larger population of adults diagnosed with cancer, and conclusions from such trials must be tempered accordingly.Implications for cancer survivorsInadequate recruitment to randomized controlled trials limits the creation of useful interventions for cancer survivors. By enrolling in cancer registries and taking part in research, cancer survivors can contribute to the development of effective resources for the survivor population.

The development and preliminary testing of a multimedia patient-provider survivorship communication module for breast cancer survivors

OBJECTIVEnThis paper describes the development of a theory-guided and evidence-based multimedia training module to facilitate breast cancer survivors preparedness for effective communication with their health care providers after active treatment.nnnMETHODSnThe iterative developmental process used included: (1) theory and evidence-based content development and vetting; (2) user testing; (3) usability testing; and (4) participant module utilization.nnnRESULTSnFormative evaluation of the training module prototype occurred through user testing (n = 12), resulting in modification of the content and layout. Usability testing (n = 10) was employed to improve module functionality. Preliminary web usage data (n = 256, mean age = 53, 94.5% White, 75% college graduate and above) showed that 59% of the participants accessed the communication module, for an average of 7 min per login.nnnCONCLUSIONnThe iterative developmental process was informative in enhancing the relevance of the communication module. Preliminary web usage results demonstrate the potential feasibility of such a program.nnnPRACTICE IMPLICATIONSnOur study demonstrates survivors openness to the use of a web-based communication skills training module and outlines a systematic iterative user and interface program development and testing process, which can serve as a prototype for others considering such an approach.

A1-3: Small-scale Implementation Study of the Cancer Survival Query System

Background/Aims The Cancer Survival Query System (CSQS) is a second generation prototype cancer prognostic tool developed by the National Cancer Institute (NCI). It was designed for physicians to use so they could better understand and communicate with prostate and colorectal cancer patients valid estimates of their cancer survival within the context of all causes of death. The aim of this study was to assess the market readiness and enhance the likelihood of large-scale adoption of CSQS. Methods We conducted a small-scale implementation study of the CSQS prognostic tool in two, purposively selected, diverse healthcare delivery systems (Kaiser Permanente Colorado and Penrose Cancer Center) in the specialty care context (oncology, urology, surgery) using a mixed method design. Additionally, two private urology practices affiliated with Penrose were incorporated into the study. Implementation strategies included identifying site champions, champions working with study staff to conduct a roll-out meeting for their department, and champions sending CSQS reminder emails drafted by study staff. Data collection consisted of automated usage tracking, follow-up champion interviews, and field notes from roll-out meetings and champion interviews. Results 96 providers attended the roll-out meetings with study staff across the seven departments. 110 providers were reached through the follow-up email sent by champions. 158 providers had login information created for access to CSQS, with 16 individual providers entering 52 different case scenarios (n=26 prostate, n=16 colorectal). KP Urology and Penrose GI departments utilized CSQS the most. Seven of the nine site champions completed the key informant interview. Ten themes were identified from qualitative analysis, including champion recommendation of CSQS to colleagues, providers using CSQS without patients in the room, and discussion of CSQS results by nurses was out of their scope of work. Conclusions Usage was consistent between the data pulls over five months. All champions agreed a patient-facing version would benefit patient-provider communication. Next steps include usability testing of CSQS with prostate and colorectal cancer survivors. Data collected from the one-on-one testing will be used to inform NCI on a patient-facing version of CSQS.